Community and Organizations Addressing Food Insecurity

Social Determinants of Health in Cancer Care

In this episode guest host, Dr. Reggie Tucker-Seeley, moderates a discussion with two leaders from two remarkable organizations with the mission to provide food to those that are facing long-term illnesses like cancer. In this episode, the importance of the community and organizations addressing food insecurity and providing needed interventions are highlighted by Alissa Wassung, Executive Director at Food is Medicine Coalition and Alyssa Baldino, Associate Director of Nutrition Services and Therapeutics at Project Angel Food.

TRANSCRIPT

The guest on this podcast episode has no disclosures to declare.

Dr. Reggie Tucker-Seeley: Welcome back to ASCO's Social Determinants of Health and Cancer Care podcast. I am Dr. Reggie Tucker-Seeley. We are continuing our conversation on “Community and Organizations Focused on organizations addressing Patient Needs in the Cancer Community.” I'm joined by Alissa Wassung, Executive Director of Food Is Medicine Coalition, and Alyssa Baldino, Associate Director of Nutrition Services and Therapeutics at Project Angel Food. In this episode, we will discuss a patient and household need that often gets overlooked following a cancer diagnosis, and that is food insecurity. We are fortunate to be joined by two people from amazing organizations with a mission to provide food to those that are facing long-term illnesses.

First, we have Food Is Medicine Coalition, which is a national organization that provides evidence-informed medical, food, and nutrition interventions to critically and chronically ill people while working to advance public policy surrounding food and nutrition. And second, we have Project Angel Food, located in Los Angeles, California, and is a part of the Food Is Medicine Coalition, which prepares and delivers healthy meals, comfort, and hope to people impacted by serious illness.

So, given that both of our guests today are named Alyssa, we're going to say Alyssa B and Alissa W to distinguish between our two guests. So, thank you both for being part of our Social Determinant of Health conversation focused on communities and organizations.

Alissa Wassung: Thank you so much for having us. We're so excited to be here.

Dr. Reggie Tucker-Seeley: Great. Let's dive right in. And this first question is one that we ask all of our guests, and that is: What does Social Determinants of Health in cancer care mean to you? We'll start with you, Alissa W.

Alissa Wassung: I would have to say that it means making sure that everyone who is coping with cancer has everything that they need to survive and thrive through the process. From our perspective as caregivers in the community for over 40 years, a lot of this knowledge and wisdom comes from our roots in the HIV epidemic and seeing how the toll of illness can take on a person and also their caregiving structure, that it affects the whole family. So really, having that holistic, person-centered view of what wellness and health means through a diagnosis like cancer, making sure that we are showing up for the food piece and paying attention to the rest of it as well. Alyssa B?

Alyssa Baldino: I've been a dietitian for nearly 15 years, and someone's ability to manage their chronic illness is so heavily influenced by their environment and the resources available. So, education is obviously a good building tool to help someone work within their resources, but it only goes so far. So, the more holistic you look at, especially cancer clients, the better you can help someone, the more you understand all the outside factors that affect their lives.

Dr. Reggie Tucker-Seeley: Thank you for providing those perspectives. Social Determinants of Health feels like such a broad term. It's often described as where we live, learn, work, and play, and that's everything. So, would you consider food insecurity as a social determinant of health?

Alissa Wassung: Absolutely. The ability to nourish oneself as you are supporting your own body through treatment and recovery is foundational to what we understand about health. I think what's different for our organizations is that food insecurity can be reduced to hunger. And certainly, our programs, medically tailored meal and medically tailored grocery programs that also provide the services of a registered dietitian that helps people with the education piece and some of the more clinical pieces like what's called medical nutrition therapy, are so much more than just addressing the hunger piece. So, food insecurity is absolutely a social determinant of health. So, in a spectrum, I would say food insecurity can be really addressed in the prevention phase and what we are doing is more on the treatment side of that food insecurity spectrum.

Alyssa Baldino: Education as registered dietitians is so powerful and can be a great tool for clients. But as a medically tailored meal provider, it's also empowering to be able to provide the food we are educating clients to nourish themselves with. So, in addition to the education piece through medical nutrition therapy, we're also able to provide the food as a resource to help address the treatment and the food insecurity.

Dr. Reggie Tucker-Seeley: So, it sounds like both of your organizations go well beyond just the notion of checking the box of "Are you hungry, are you food insecure, yes, or no?" I'd love to hear more about your organization. So, Alissa W, can you tell us a bit more about Food Is Medicine?

Alissa Wassung: The Food Is Medicine Coalition's history is really the history of our partner agencies, and so many of them got their start, as I briefly mentioned before, at the height of the AIDS pandemic back in the 1980s. And this was a time when HIV was not as understood as it is today. It was tremendously stigmatizing, and it was scary for some. Our communities across the country stepped into that space and brought hope and dignity to that situation in a time when there wasn't a lot of service available for folks. This was volunteers going into people's homes and bringing them food, as they recognized the effects of HIV, which included wasting, and tried to help people be as healthy as they could be when there was no treatment available.

The biggest realization during this time was that folks in this situation needed more than just access to food. They were too sick to shop or cook for themselves. And so, people were delivering groceries and they got left on the counter and just stayed there. And so, the recognition that people needed more than a meal, they needed meals tailored for their illness and delivered to their home so that they could live as long as they could with the illness that they had. Registered dietitians were actually foundational to this process because their services and understanding how to combat wasting or side effects of medication when it came on the scene was foundational to people actually eating. Appetite tends to be one of the first things to go when someone is sick, and that is certainly true in cancer care.

And so fast forward to a time when most of our agencies expanded their missions, now serving people living with multiple illnesses in communities across the country. What's very different about our clients is that they actually tend to be living with multiple illnesses at once. So, a client where I used to work at God's Love We Deliver, which is our non-sectarian, nonprofit peer agency in New York City, about 40% plus or so of folks were living with four or more illnesses at once. So very much trying to address the complexity of that situation with access to compassionate nutrition care.

We do all of this in the community with the help of thousands of volunteers a year and the support of our communities through philanthropy. Because despite the awesome intervention and its life-saving results, there still is no dedicated federal funding for what we do.

Dr. Reggie Tucker-Seeley: I'd love to hear from Alyssa B.

Alyssa Baldino: We were founded 35 years ago by Marianne Williamson. That name might sound familiar. As Alissa W. was saying, we started out of the HIV/AIDS epidemic. We started out to provide food for people who didn't have food. They needed a lot of calories, and as medications got better for HIV/AIDS, about 20 years ago, we shifted to medically tailored meals and started providing meals to, actually cancer patients was one of our first groups that we started providing medically tailored meals to. And then kidney disease is something we address, diabetes, heart disease. And usually how patients find us is through their doctor and also, I like to think we're pretty well known in Los Angeles. We have a lot of celebrity support that gets our name out there. Harry and Meghan made deliveries for us. Like Alissa was saying, volunteers, so we have the spectrum of volunteers. Patients are generally referred to us from medical providers and a lot of the cancer centers.

Dr. Reggie Tucker-Seeley: Well, in two words, you mentioned Harry and Meghan. If you just have to say their first names, then you know that they're famous. So that's amazing.

I'd like to talk about how both of your organizations partner with healthcare delivery systems and healthcare organizations. Can you talk a little bit about how you partner and whether or not you're housed within healthcare systems or you're outside of healthcare systems? We'll start with Alissa W.

Alissa Wassung: Oh, my goodness, what an incredible question. That would only take us about five hours to discuss, so we'll try to keep it brief. So FIMC is an organizing entity. We organize service providers, so we don't provide service specifically, but we know a lot about how best to provide service. So, we gather together, as you heard earlier in the podcast, to advance equitable access to medically tailored meals and medically tailored groceries through policy change, research, and evaluation, and best practices. The way that that translates into our partnership with healthcare really is to think through the service itself. So, as Alyssa B mentioned, we've always partnered with health care, even from the philanthropic side of our services, where when someone comes into our organizations for service, we really kind of adopted a no wrong door entry method. They can call, their brother, sister, second cousin twice removed can call, their doctor can refer them, a health plan can also refer them, community-based organizations can refer them. So, we want to make sure that we're there for people wherever they are.

Once they come into our organizations, it's critically important that we establish that clinical continuity of care. So, we're confirming their need for the service with their healthcare professional so we're in sync and we're managing in the same way toward a specific result. And I will say, serving people with cancer, various cancers, was one of the first mission expansion populations so we've done it for a really long time. And now that we've had these decades of experience, there's been a lot of research that has started to be done on the efficacy of receiving this type of service from a community-based care perspective. And that's showing a lot of really incredible positive outcomes. Like people who get this service go to the hospital half as much, 50% reduction in hospitalizations. They tend to go home after a hospitalization if they have one, instead of to a long-term care facility. And then, of course, healthcare cost reductions. When people are getting the right food for their illness, they tend to use less services and be healthier, surprisingly, right? As healthcare has kind of slowly seen the efficacy of what we do, more and more payers are using some of the flexibilities that are available in our public insurance infrastructure like Medicare and Medicaid to pay for this service. So, we are seeing more and bigger partnerships, usually in those local contexts with healthcare payers.

But despite all of this forward momentum into integrating such a critical service into medical care for people living with illness like cancer, they’re still remaining in the margin of innovation. So, they’re not really making their way into all the parts of our healthcare infrastructure where people are needing the service. And so that’s where we, as FIMC, enter the scene advocating for that policy change that would allow more equitable access to this across the country.

Dr. Reggie Tucker-Seeley: Those are two key points, I think, sort of thinking about how to reduce costs if this is an intervention that reduces costs. But then the challenge is, how do we integrate that into the current clinical workflows as patients are navigating the healthcare delivery system? Alyssa B.?

Alyssa Baldino: A client’s provider will be referring them to us, then we also have a lot of partnerships with different community-based organizations specifically focused on cancer. We’ve had partnerships with The Susan Komen Foundation, we have a partnership with F Cancer that has a focus on referring clients who are primarily Spanish speaking and have any type of cancer. And also in California, there’s Cal AIM which Medicaid pays for meals. So, we have five healthcare partnerships, and one of our healthcare partnerships does cover cancer through that program.

And also in the same San Gabriel Valley, we have partnerships with five different hospitals. One being the City of Hope Cancer Center and that has a very specific focus on food insecure clients being discharged from the hospital and being referred to our meals and education. So, there are different funding streams and coverage for our cancer clients.

Dr. Reggie Tucker-Seeley: Which I imagine is very difficult to manage sort of thinking through all of those very complex funding streams.

I’d love to focus just a little bit on what have you both found that are some of the challenges that patients face after a cancer diagnosis? I’ll start with Alyssa B. this time.

Alyssa Baldino: Sure. So, cancer is very challenging on the client, themselves, the family. When you're going through cancer treatment, you're very sick, you're in and out of the hospital. So as a community-based organization, we provide meals for anyone who has– If you're undergoing cancer treatment, you qualify for our meals. So, when that referral comes in, we get someone started on our meals. They're on service until they are no longer going through treatment. On a weekly basis, we have a delivery driver going to the house, and they can see any differences in the client. “Oh, they look like they lost a lot of weight. Do they need more meals? Are they not able to care for themselves? Do they need a caregiver? Do we need to reach out to their case manager?” So, we have eyes on the clients. That's a very powerful piece, especially when referrals are coming to us.

And then just from a nutrition standpoint, we have multiple different meal plans that may benefit the client as they're going through these different challenges. So, we have a GI meal plan for those people that might be having a hard time tolerating food, but they need to get those calories in. Then if someone's feeling a little bit better, we just have a general wellness diet. We give a variety of meals that might be someone who's feeling a little bit better through their treatment. And then we also have a modified texture for those having trouble chewing or swallowing. We try to meet the clients where they are and really address what they need at that time in their treatment. And then additionally, we were able to provide children’s breakfast bags, because if a parent is going through treatment, obviously, we can't forget about who else is in the home and needs their needs addressed.

Alissa Wassung: One of the really important pieces of our food is its quality. As I had mentioned before, appetite can be really challenging in a cancer diagnosis, so we need to make our food as appealing as possible. We would never want to send food that people aren't going to eat. And then, where possible, implementing some client choice. A lot of our agencies tend to send their food frozen. And this is actually really important in cancer treatment because you may not feel like eating the soup, you're sent one day. So, you can kind of choose a different soup if you're getting multiple meals delivered at once and there's some sort of control that the client has. There's some agency that's really important to us. And as Alyssa said, they're providing meals to children, some agencies provide meals also to caregivers or senior caregivers. There's so many seniors taking care of seniors at this point in our country. So, we try to recognize that. And I don't know that that's anything insurance will ever pay for, although Massachusetts might have a jump on that.

And then I think hearkening back to our roots in the HIV epidemic, really paying attention to cultural competency and delivering things in a compassionate way. And that connection with the registered dietitian, being able to come back to them at any time in the intervention and say, ‘Hey, my medication changed. What do I do now?” Or “I really can't stand fish, it doesn't make me feel good, can you sub it out for something else?” Those very small but ultimately big interactions make all the difference in somebody's care when it comes to the medical tailoring piece of the intervention as a whole.

Dr. Reggie Tucker-Seeley: So, you both have either said explicitly or through your examples that it is really important for both of your organizations to meet patients where they are. I imagine that doing that, you face many challenges in making those connections with patients and getting them the food resources that they need. Can you tell us a little bit about what some of those challenges might be and how do you overcome those challenges?

Alissa Wassung: I do believe that we are not out of the woods yet on challenges in terms of accessing our services. And even some of the current regulatory structure makes it challenging for people to access our services. I think navigating the community connection is one, and keeping those relationships alive and well so you are seen as this hub to coordinate nutrition care. The other piece is just navigating the healthcare system. It's extraordinarily challenging for payers and providers, imagine community-based organizations navigating it from the outside without the access to technology and systems. So, as we've seen that kind of integration evolve over the years, we've seen the barriers, whether that be exchanging secure data or incorporating, as you said so well, like screening for food insecurity, or in our case, malnutrition, which is a better predictor of the need for medically tailored meals into a clinical workflow. And then at the point where someone screens positive, developing those systems to warmly hand off somebody to community care and make sure they're getting the nutrition care they need. So, reforming the system is probably one of the other big challenges.

And even as healthcare has endeavored to do that, a lot of the burden of incorporating into the healthcare system has been kind of put on the nonprofit side. So, an example being a medically tailored meal provider might have relationships with several Medicaid plans in a state, and each Medicaid plan might have a different system, a different electronic medical record, or a different referral system. And that nonprofit will have to figure out, from a capacity perspective, how do I participate in all those systems to get people care, not kind of the other way around. So, it's definitely something we have eyes on and provide a lot of technical assistance on for our agencies, but something that we're hoping changes as policy evolves.

Alyssa Baldino: As a medically tailored meal provider, we are trying to be that puzzle piece of food for clients. People have very complex needs out there. So, if you address one thing, you're going to need to address other things. So, we actually have a client advisory board that, clients, we elicit feedback from them. And one major thing that came up recently was that clients said, we need more help than just food. We need other resources. We have built into our workflow of referring clients out to other resources. And in particular, even though we are a food provider, we only provide one meal per day, generally. So, we've started signing up a lot of our clients for snack benefits that aren't already enrolled and then just working with our other food providers in the community. But yet it's so hard to address everything in this complex system and world.

Dr. Reggie Tucker-Seeley: I think, too, one of the things that both of your responses highlighted and that both of your organizations represent is the need for us to think at multiple levels at multiple times. And that can be quite challenging to do. So, how does each of your organizations define success? And how have you been able to achieve that success over the years that you've been working on this issue? Alissa W?

Alissa Wassung: I think when you address the totality as Alyssa B. was just thinking about it, and as you've laid out, I feel like it can be kind of overwhelming because there is a lot of need, and the needs are complex. And so, at a very baseline level, I try to remember the fact that because our phenomenal FIMC agencies exist, people going through illness across the country are fed today and then we can build from there. Where I see success is in the current policy conversation that we're having. Last September, after over a 50-year hiatus, the White House held the White House Conference on Hunger, Nutrition, and Health. And it focused very solidly on equity and on food as medicine and Medically Tailored Meals was highlighted, there were recommendations for policy change. There was the input of people with lived experience. And it was really this rallying moment 50 years after the first conference that gave us SNAP and WIC and school lunch and just like, landmark policy change for us to refocus again on what food looks like today, what nutrition means for health in our country. So now there's this kind of focus on food as medicine, and I feel like an energy that wasn't there before. So, we are hoping to use this moment to kind of further the policy needs that we have gathered over the last 40 years of service and make real change to that structure.

The other thing that I think is really important in these conversations is really thinking about our clients’ perspective and where collaboration with other systems, rather than creation of a new system, can really bring them the answer to the needs that they've evidenced. And we're thinking about that a lot as USDA and HHS are really asking: Where's the warm handoff here from the programs that already exist and the ones we need to create? When it comes to medically tailored meals, I think success there is really making Medically Tailored Meals a reimbursable benefit for people who need it in our public insurance structures and making sure it's accessible across the country. So, we're getting there.

Alyssa Baldino: We like to think that we're very successful in the community, that we attend community events with other organizations. We have a lot of partnerships. We constantly are having new partnerships to address a spectrum of diagnoses. We're always adding more to who we cover for our medically tailored meals. And so, we really think we're a mainstay community resource, and we couldn't do it, especially through the pandemic, without volunteers. And we just really expanded during the pandemic, and that really speaks to the need that is out there. We're trying to do as much as we can, and actually we're expanding to a new building to serve more people, to serve double the amount of people we currently serve because, again, the need is there, and you always hope the funding follows the need.

Dr. Reggie Tucker-Seeley: It sounds like Alyssa B.; you work directly with the clients and sort of providing them with the meals. And Alyssa W., you work more with all of the organizations in terms of how best to build this coalition and sort of help them work with the respective clients. So, can you talk a little bit about if someone wanted to partner with you? What is the best pathway?

Alissa Wassung: I would say FMIC is the coordinating center of connecting to partner agencies. If you have any questions, we have a super easy form on our website, and we will get back to you. You can also sign up for our listserv where we hold quarterly meetings that anybody can attend, usually with an invited guest talking about progress in the field, but we can serve that coordinating function. If you have someone in your circle who needs help from a FMIC agency, you can do a search on our website for that agency or look up and connect directly with folks like Project Angel Food. Volunteer, donate - these are all also ways to continue to help us across the country because we're still majority funded and supported by our communities in philanthropy.

One other way that I would say for health systems specifically to access or understand the opportunities in their state is look at what's happening in Medicaid. There's so much movement right now on the waiver front in terms of allowing plans to pay for these types of services. And state Medicaid websites are a really good resource, but definitely open to being that coordinating body for access for a variety of different constituencies.

Dr. Reggie Tucker-Seeley: And Alyssa B., in terms of folks getting directly in contact with you, should patients contact you directly, healthcare systems directly? All of the above?

Alyssa Baldino: Yeah, exactly. I can't tell you how many emails we get a week of just people reaching out, just, “Hey, can we talk?” And sometimes it's actually clients that maybe heard us on a podcast, but they live in Missouri. So, then I go to our FMIC website and connect them with resources there. But yeah, just reach out, call, email, volunteer, get to know us. We always have the need for volunteers. That's one of the best ways to also give back to your community locally.

Dr. Reggie Tucker-Seeley: My last question is about, and you hinted at this Alyssa W. In terms of the White House meeting and following up on what's going on with Medicaid, are there any policy initiatives that you're currently working on or that you're aware of that could assist with the elimination of food insecurity for those with a chronic disease like cancer?

Alissa Wassung: So there definitely are. And we really try to take a broad approach to policy working not just on the legislative side, but also the administrative side. In fact, in the last years, we've seen so much progress on the administrative side and using these flexibilities. I would say at a state-based level, there is tremendous progress using state-based Medicaid waivers to provide these services, as I just said. And the best way to understand that is to go to CMS's website or go to your state Medicaid website and take a look. It's really remarkable. Cal AIM, which Project Angel Food participates in, is just one example. There are initiatives in Massachusetts, New York, Pennsylvania, Arkansas, states you may or may not be familiar with in terms of progress on social determinants of health.

At the federal level, CMS continues to pay attention to social determinants of health and a lot of the newer regulations take into account the need to screen for food insecurity, to make sure that that question is asked of folks. We then advocate for, well, then what happens? We have to be able to give clinical providers a place to go or something to do after they identify that need. So, lots of progress there. NIH has a new research initiative that they're gaining input on through a request for information about Food as Medicine. So, lots of federal progress.

The one advocacy point I would mention here is that in two different congresses there has been a bipartisan introduction of a bill that would fund a pilot that would test medically tailored meals in Medicare, so for older Americans and those living with disabilities, and really give us the data to build a more resilient healthcare system by measuring it in different geographic populations and across different states. So, we really are looking forward to that bill being reintroduced this year in a not only bipartisan way, but a bicameral way in both the House and Senate. And when that happens, we hope you will advocate and ask for passage because it could really change the landscape of access for people with cancer across the country.

Dr. Reggie Tucker-Seeley: Great. And Alyssa B.?

Alyssa Baldino: The biggest one is Cal AIM is the Medicaid waiver because it's not permanent, it's not guaranteed for the future. So, it's really important that we utilize the waiver and show the effectiveness—which one of our healthcare partnerships has already started running the numbers, and it's working, providing medically tailored meals and education - it works. So, we're hoping that all of the data that is so far collected shows that this should be a permanent benefit and so many people, especially cancer clients, could benefit from it.

Dr. Reggie Tucker-Seeley: Well, this has been an amazing conversation and I want to give you both an opportunity to leave any final thoughts you’d like to leave with our listeners, including how to get in touch with you.

Alissa Wassung: My parting thoughts are that, regardless of policy change, FMIC agencies are here to help. Get in touch with us, make sure that we know where there's needs so that we can meet our communities where they are. And the best way to do that, at least from the FMIC central side, is by writing, [e-mail] or filling out our request form on our website.

Alyssa Baldino: Go to our website if you're in Los Angeles, angelfood.org, email at [e-mail] if you have any questions and it can be directed to all of our different departments, but also mine and my colleagues. Emails are all on our website. Again, angelfood.org.

Dr. Reggie Tucker-Seeley: Great. Well, thank you to Alyssa Baldino and Alissa Wassung for all of your work in helping to address food insecurity, cancer patients, and all patients.

And thank you so much for joining us on this episode of ASCO's Social Determinants of Health in Cancer Care podcast.

Alyssa Baldino: Thank you.

Alissa Wassung: Thank you.

Dr. Reggie Tucker-Seeley: And thank you to our audience for listening to this great discussion on community organizations and food insecurity. Please join us for the next episode where we will talk about Social Determinants of Health in Cancer Care on a global scale.

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